Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer’s disease by offering advance care planning—a prospective double-arm intervention study

BMC Medical Ethics

Study Protocol

Julia Haberstroh¹  Aoife Poth¹  Stefanie Baisch¹  Anna Theile-Schürholz¹  Tanja Müller¹  Jonas Karneboge¹  Daniel Garmann²  Janina Florack²  Nathalie Pfeiffer³  Gregor Lindl³  Christina Abele⁴  Frank Oswald⁵  Martin Grond⁶  Bogdan Alin Caba⁶  Heiko Ullrich⁶  David Prvulovic⁷  Andreas Reif⁷  Tarik Karakaya⁷  Irene Schmidtmann⁸  Ingmar Hornke⁹ 

[1] Faculty V: School of Life Sciences, Institute of Psychology, Psychological Aging Research (PAR), University of Siegen, Adolf-Reichwein-Str. 2a, 57068, Siegen, Germany;Faculty V: School of Life Sciences, Institute of Psychology, Psychological Aging Research (PAR), University of Siegen, Adolf-Reichwein-Str. 2a, 57068, Siegen, Germany;Kreisklinikum Siegen, Siegen, Germany;Faculty V: School of Life Sciences, Institute of Psychology, Psychological Aging Research (PAR), University of Siegen, Adolf-Reichwein-Str. 2a, 57068, Siegen, Germany;University Hospital Frankfurt, Frankfurt am Main, Germany;Faculty V: School of Life Sciences, Institute of Psychology, Psychological Aging Research (PAR), University of Siegen, Adolf-Reichwein-Str. 2a, 57068, Siegen, Germany;University Medical Center of the Johannes Gutenberg University, Mainz, Germany;Goethe University Frankfurt, Frankfurt am Main, Germany;Kreisklinikum Siegen, Siegen, Germany;University Hospital Frankfurt, Frankfurt am Main, Germany;University Medical Center of the Johannes Gutenberg University, Mainz, Germany;Würdezentrum, Frankfurt am Main, Germany;

关键词: Dementia;    Alzheimer’s disease;    Memory clinic;    Advance directive;    Patient empowerment;    Advance care planning;    Autonomy;    Supported decision making;   

DOI  :  10.1186/s12910-022-00854-0

 received in 2022-05-03, accepted in 2022-11-02,  发布年份 2022

来源: Springer

【 摘 要 】

BackgroundEverybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer’s dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is ‘Respecting Choices’®—an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study’s aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD.MethodWe intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed.DiscussionThe results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD.Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691

【 授权许可】

CC BY   
© The Author(s) 2022

【 图 表 】

12936_2022_4386_Article_IEq169.gif